Our Hero

So much time has gone by since my last post that I don't even know where to begin.  With the holidays life got hectic, and I put off writing about June.  I have a list of blog topics I planned to write about, but today I will just stick with an update on June. Overall, she is doing pretty well on the ketogenic diet and is tolerating it well. Although she continues to have seizures daily, they are not as frequent as before we started the diet.  A few weeks ago we switched from a breast milk, olive oil, and soy formula mixture to a strictly powdered formula. Since switching to the formula, we have seen a big improvement in June's development and a decrease in seizure activity.  We think the problem with the diet before was that we weren't entirely sure how many carbohydrates were in my breast milk - it can vary. So while we thought June was on a 4:1 ratio, we were not certain.

Some of June’s accomplishments over the last few months are listed below.

•  June mimics us and is making different sounds.  This makes us optimistic because it shows she is taking in information, processing it, and then sending it back out.  Her neurologist was particularly pleased about this.
• Her head control continues to improve.
• She can lift her head and look side to side when she is on her tummy.
•  She can stand in her bouncer for short periods of time. She needs assistance to make sure she does not whip her head from side to side, but she is improving.
•  When I hold her she is starting to push off my chest and look around.
•  When she sits supported on my lap or against the couch she is able to keep her head steady for longer periods of time.

• She is more aware of her surroundings and is easily comforted when Matt or I hold her.

•  She loves her bath whereas before she would cry the entire time.

• She calms to music, especially Ella Fitzgerald & Louis Armstrong.  Her favorite song is "Isn't It a Lovely Day." She is also a fan of Jack Johnson, Nora Jones, and Otis Redding.  Random I know, but their voices calm her.

• She is tracking objects more smoothly and consistently.

• June sleeps for longer periods of time, and we are trying to wean her off her swaddle.

I would like to take a moment to point out how huge it is that June has made so much progress.  I don't always fully appreciate how difficult it must be for June to grow and develop given all the chaos in her brain.  I recently came across a blog post from another mother of a baby with Infantile Spasms where she showed a picture of a baby's EEG with Infantile Spasms and a picture of an EEG from a baby without Infantile Spasms.  I thought it was extremely powerful, so I am going to borrow from her post to show you the difference.

This is a picture of a normal EEG.  Notice how it is pretty and organized.

This is a picture of an EEG pattern consistent with Infantile Spasms.

Given how unorganized the activity is in June's brain, the fact that June can mimic us, lift her head, respond to music, and differentiate between Matt and me is truly amazing.  We are so proud of her.   I know I've said this before but I'll say it again. I am in awe of our June.  Since she came into this world 8 months ago, her personality has been fighting to come out.  And she has managed to do it.  I sometimes wonder that if I was fighting the same illness, could I be as strong as June?  She must get her determination and tenacity from her Daddy because I am quite certain I would want to give up.  All of our babies with IS and other forms of epilepsy deserve a round of applause because they are in all senses of the word heroes.

June in her bouncer.

Ketosis

Matt and I are pleased to report some happy news – June is in "ketosis!" I think that sounds so funny to say about a baby, like she is in some far off galaxy, but that is how the doctors refer to it, so that is how I will describe it too.  All it means is that she is now using fat for energy instead of glucose.  After our trip to Detroit to see Dr. Chugani, Matt and I decided to start June on the Ketogenic Diet.  When we followed up with our doctor here, we realized June wasn’t doing as well as we thought on Vigabatrin.  So, we decided it was better to move forward with a new treatment rather than go backwards to something that wasn’t working well.

On Monday, June started the diet in the hospital. We were there for four days, and we spent a majority of the time with the dietician learning about the diet. Each baby or child on the diet has a specific diet “ratio” of fat to carbohydrate and protein grams combined to follow based on weight, height, and ketone levels.  It can take some trial and error to get to the proper ratio.  As of now, June’s ratio is roughly 3.25:1, which means her diet provides 3.25 grams of fat for every 1 gram of carbohydrate and protein.  Sound complicated? Well, it is.  That is why you start the diet in the hospital with help from the dietician.  The doctors also needed to monitor June to make sure she handled the diet okay.  To make the formula, we mix RCF (Ross Carbohydrate Free) soy formula, breast milk, and olive oil.  Since June is so little it is fairly easy to administer, but we still need to measure each ingredient with a gram scale and when the recipe calls for 18 grams of something, it has to be 18 grams. It can’t be 18.1 or 17.9.  I’ve spent a lot of time adding and removing little droplets of liquid because of a measly decigram.  Additionally, not only do we need to make adjustments to June’s food, but also her medicines, lotions, diaper cream, and even tooth paste (once she has teeth to brush).  I never would have thought lotion, for example, would have carbohydrates in it, but a lot do and using it could throw off June’s state of ketosis.  In order to tell if June is in ketosis, we test her urine several times a day with test strips.

All of this sounds like a big to-do, but it is all worth it because June has made so much progress since starting the diet. On Wednesday, she clasped her hands together for the first time and began to bear down weight on her legs.  She can also lift her head higher when she is on her tummy and she is more focused on her environmental surroundings.  Yesterday, she even seemed to respond more to noise.   When she was sleeping she woke up to the sounds of people talking and when the phone rang she began to cry because it woke her up. We never had to worry much about noise levels when June was sleeping, but I am so happy that I need to now.  It is an unbelievably great worry to have! We are hopeful that if June has made this much progress in less than a week, she will continue to improve as time goes on.

I will be the first to admit that I am shocked by June’s improvement.  When I first heard about the diet, I thought it was a bunch of hocus-pocus.  As a society, we are taught to believe medicine only comes in the form of a pill.  I couldn’t believe that changing June’s diet would actually improve her development and possibly stop her spasms.  In a few weeks, June will have another EEG to see if the diet is halting the abnormal activity in her brain, but the doctors said to give it 2-3 months to see if the diet will make her EEG normal. 

Thanks for reading.  We fight on.

June found her hand while cheering on the Cardinals in the hospital